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Article ; Online: Mapping psychosocial interventions in familial colorectal cancer: a rapid systematic review.

Ciucă, Andrada / Moldovan, Ramona / Băban, Adriana

2022 Volume 22, Issue 1, Page(s) 8

Abstract: Background: Approximately 5% of colorectal cancer (CRC) cases are part of a well-defined inherited genetic syndrome and up to approximately 30% of these cases have a clinically defined familial basis. Psychosocial interventions in familial colorectal ... ...

Abstract	Background: Approximately 5% of colorectal cancer (CRC) cases are part of a well-defined inherited genetic syndrome and up to approximately 30% of these cases have a clinically defined familial basis. Psychosocial interventions in familial colorectal cancer address aspects mainly focused on affective, cognitive and behavioural outcomes. The present review aims to systematically map out the available psychosocial interventions for individuals with a family history of CRC and describe the current state of the research. Methods: An extensive electronic search was conducted to investigate the literature published until June 2020. Inclusion criteria consisted of quantitative studies published in English that explored the impact of psychosocial interventions for familial CRC, clearly defined the psychosocial intervention offered and included participants with a family history of CRC. Results: The analysis included 52 articles. Genetic counselling, educational interventions, psychological interventions and multimodal interventions were identified across the studies. In terms of diagnoses, Lynch Syndrome, Familial Adenomatous Polyposis, Familial Colorectal Cancer were the main conditions included in the studies. Affective, cognitive, behavioural aspects and quality of life emerged as the most frequently explored outcomes. The studies included individuals with both personal and familial history of CRC or family history alone. Conclusions: Our rapid review provides an overview of the literature exploring the impact of psychosocial interventions for familial CRC. The psychosocial interventions identified had an overwhelmingly positive impact across all types of outcomes measured. Genetic counselling appeared to be most beneficial, and this is expected as it is purposively designed to address genetic conditions. Further quantitative analysis of primary empirical research is needed to determine the efficacy and effectiveness of psychosocial interventions as well as the mechanisms through which they exert their effect.
MeSH term(s)	Adenomatous Polyposis Coli/congenital ; Adenomatous Polyposis Coli/psychology ; Adenomatous Polyposis Coli/therapy ; Adult ; Colorectal Neoplasms/congenital ; Colorectal Neoplasms/psychology ; Colorectal Neoplasms/therapy ; Colorectal Neoplasms, Hereditary Nonpolyposis/psychology ; Colorectal Neoplasms, Hereditary Nonpolyposis/therapy ; Female ; Genetic Counseling ; Humans ; Male ; Medical History Taking ; Middle Aged ; Psychosocial Intervention ; Psychotherapy ; Quality of Life
Language	English
Publishing date	2022-01-03
Publishing country	England
Document type	Journal Article ; Systematic Review
ZDB-ID	2041352-X
ISSN	1471-2407 ; 1471-2407
ISSN (online)	1471-2407
ISSN	1471-2407
DOI	10.1186/s12885-021-09086-8
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Article: Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.

Radu, Mădălina / Moldovan, Ramona / Băban, Adriana

Journal of community genetics

2022 Volume 13, Issue 3, Page(s) 293–302

Abstract: Complex health needs are demanding and often require additional medical, psychological and social support. All those involved (e.g., patients, carers, professionals) face a unique set of challenges and needs, especially in families where the patient is a ...

Abstract	Complex health needs are demanding and often require additional medical, psychological and social support. All those involved (e.g., patients, carers, professionals) face a unique set of challenges and needs, especially in families where the patient is a child or a young person with a lifelong condition. The aim of the study was to explore carers' and young people's needs when living with long term conditions, as well as the views of the healthcare professionals supporting them. Semi-structured interviews with 30 participants (11 professionals, 10 parents, and 9 young people) were conducted. Interviews focused on 3 main areas-(1) medical needs, (2) psychological needs, and (3) communication needs-and were analyzed using thematic analysis. Four main themes emerged: (1) Acceptance takes time refers to the often long and challenging process of adapting to the diagnosis and living with the condition; (2) Close guidance captures the importance of specialised and long term guidance in accessing and managing the complexities of the medical system; (3) Open communication shows the families' need to be collaboratively connected to healthcare providers and other families facing similar difficulties; and (4) Long-term support underlines the importance of long term formal and informal support strategies. The participants' experiences and views have provided us with insight and guidance for developing and implementing personalized and integrated services. This inside perspective is key for future research aimed at better understanding the impact of complex conditions and meaningful ways to support families throughout their journeys.
Language	English
Publishing date	2022-03-18
Publishing country	Germany
Document type	Journal Article
ZDB-ID	2543127-4
ISSN	1868-6001 ; 1868-310X
ISSN (online)	1868-6001
ISSN	1868-310X
DOI	10.1007/s12687-022-00586-z
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Article ; Online: The effectiveness of psychiatric genetic counseling training: An analysis of 13 international workshops.

Mack, Tiera / Batallones, Rolan / Morris, Emily / Inglis, Angela / Moldovan, Ramona / McGhee, Kevin / Zimmerman, Kip D / Austin, Jehannine

American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics

2024 , Page(s) e32978

Abstract: Studies have consistently shown that psychiatric genetic counseling (pGC) helps people with psychiatric conditions by increasing empowerment and self-efficacy, and addressing emotions like guilt. Yet, it is not routinely provided. Genetic counselors and ... ...

Abstract	Studies have consistently shown that psychiatric genetic counseling (pGC) helps people with psychiatric conditions by increasing empowerment and self-efficacy, and addressing emotions like guilt. Yet, it is not routinely provided. Genetic counselors and trainees express low confidence in their ability to provide meaningful pGC, especially in the absence of adequate training. Therefore, to address this gap a "Psychiatric Genetic Counseling for Genetic Counselors" (PG4GC) workshop was developed and delivered to 13 groups of participants (primarily qualified genetic counselors and trainees) between 2015 and 2023 (10 workshops were delivered in-person, and three virtually). Participants completed quantitative questionnaires both before and after completing the workshop to assess their comfort, knowledge, behavior, and feeling of being equipped to provide pGC. In total, 232 individuals completed the pre-workshop questionnaire and 154 completed the post-workshop questionnaire. Participants felt more comfortable, knowledgeable, and equipped to provide pGC, and reported being more likely to address psychiatric concerns after the workshop, regardless of whether they were trainees or practicing professionals and whether they completed the workshop in-person or virtually. This study suggests that the PG4GC workshop is an effective educational tool in pGC training that may aid in broader implementation of the service.
Language	English
Publishing date	2024-03-21
Publishing country	United States
Document type	Journal Article
ZDB-ID	2108616-3
ISSN	1552-485X ; 1552-4841 ; 0148-7299
ISSN (online)	1552-485X
ISSN	1552-4841 ; 0148-7299
DOI	10.1002/ajmg.b.32978
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Article ; Online: Assessment highlights need for improvement in standards of development of core outcome sets for rare genetic diseases.

Ciucă, Andrada / Banka, Siddharth / Newman, William G / Moldovan, Ramona / Kirkham, Jamie J

Journal of clinical epidemiology

2023 Volume 161, Page(s) 84–93

Abstract: Objectives: A rare disease is classified as such if it affects less than one person in 2,000. The Core Outcome Set STandards for Development (COS-STAD) is a set of standards that represent the minimum recommendations to be considered in the process of ... ...

Abstract	Objectives: A rare disease is classified as such if it affects less than one person in 2,000. The Core Outcome Set STandards for Development (COS-STAD) is a set of standards that represent the minimum recommendations to be considered in the process of core outcome set (COS) development. The aim of this study was to provide a baseline assessment of COS development standards for rare genetic diseases. Study design and setting: Core Outcome Measures in Effectiveness Trials (COMET) database contains nearly 400 published COS studies according to the latest systematic review. Studies focusing on COS development for rare genetic diseases were eligible for inclusion and were assessed by two independent evaluators. Results: Nine COS studies were included in the analysis. Eight different rare genetic diseases were investigated. None of the studies met all the standards for development. The number of standards met ranged from 6 to 10, and the median was 7. Conclusion: This study is the first study to assess COS-STAD for rare genetic diseases, and it highlights a great need for improvement. First in terms of numbers of rare diseases considered for COS developments, second in methodology, particularly regarding the consensus process, and third in reporting of the COS development studies.
MeSH term(s)	Humans ; Delphi Technique ; Endpoint Determination/methods ; Outcome Assessment, Health Care/methods ; Rare Diseases/genetics ; Rare Diseases/therapy ; Research Design ; Treatment Outcome
Language	English
Publishing date	2023-07-07
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	639306-8
ISSN	1878-5921 ; 0895-4356
ISSN (online)	1878-5921
ISSN	0895-4356
DOI	10.1016/j.jclinepi.2023.07.002
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Article: Developing genetic counselling services in an underdeveloped healthcare setting.

Ciucă, Andrada / Moldovan, Ramona / Băban, Adriana

Journal of community genetics

2021 Volume 12, Issue 4, Page(s) 539–548

Abstract: Genetic counselling services are well established in North America, Western Europe and Australia. In other regions, genetic counselling services are still emerging. Where this is the case, an in-depth understanding of the main stakeholders' needs, ... ...

Abstract	Genetic counselling services are well established in North America, Western Europe and Australia. In other regions, genetic counselling services are still emerging. Where this is the case, an in-depth understanding of the main stakeholders' needs, challenges and opportunities will inform the changes and innovations required to bring genetic counselling closer to the community. The present study explored the needs and challenges of patients, family members and professionals with a view to setting up a cancer genetic counselling service in Romania. In order to get a comprehensive outlook, key stakeholders were interviewed using data source triangulation method. Thirty-four semi-structured interviews were conducted (13 patients, 11 family members and 10 professionals). Thematic analysis was used to explore and identify needs, barriers and opportunities in emerging cancer genetic counselling services. Three major themes were identified: (1) the "Needs" theme mainly focuses on various types of support that participants mentioned wanting: psychosocial, peer and additional support; (2) the "Challenges" theme includes aspects related to limited access to healthcare, lack of integrated services and pressure on the families; (3) the "Hopes" theme highlights the wish for integrated healthcare and an empathic rapport with healthcare providers. Our findings highlighted the main needs, challenges and hopes the patients, family members and professionals have and provides the groundwork for setting up cancer genetic counselling services.
Language	English
Publishing date	2021-09-20
Publishing country	Germany
Document type	Journal Article
ZDB-ID	2543127-4
ISSN	1868-6001 ; 1868-310X
ISSN (online)	1868-6001
ISSN	1868-310X
DOI	10.1007/s12687-021-00546-z
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Article ; Online: An European overview of genetic counselling supervision provision.

Paneque, Milena / Guimarães, Lídia / Bengoa, Joana / Pasalodos, Sara / Cordier, Christophe / Esteban, Irene / Lemos, Carolina / Moldovan, Ramona / Serra-Juhé, Clara

European journal of medical genetics

2023 Volume 66, Issue 4, Page(s) 104710

Abstract: Genetic testing is becoming more commonplace in general and specialist health care, and should always be accompanied by genetic counselling, according to legislation in many European countries and recommendations by professional bodies. Personal and ... ...

Abstract	Genetic testing is becoming more commonplace in general and specialist health care, and should always be accompanied by genetic counselling, according to legislation in many European countries and recommendations by professional bodies. Personal and professional competence is necessary to provide safe and effective genetic counselling. Clinical and counselling supervision of genetics healthcare practitioners plays a key role in quality assurance, providing a safe environment not only for patients but for professionals too. However, in many European countries, genetic counsellors are still an emerging professional group and counselling supervision is not routinely offered and there are no enough evidences on the impact of these insufficiencies. This study aimed to explore the current status of genetic counselling supervision provision across Europe and to ascertain factors that might be relevant for the successful implementation of counselling supervision. A total of 100 practitioners responded to an online survey; respondents were from 18 countries, with the majority working in France (27%) and Spain (17%). Only 34 participants reported having access to genetic counselling supervision. Country of origin, the existence of a regulation system and years of experience were factors identified as relevant, influencing access and characteristics of counselling supervision. Although there is a growing number of genetic counsellors trained at European level, just a few countries have implemented and required as mandatory the access to genetic counselling supervision. Nevertheless, this is essential to ensure a safe and effective genetic counselling and should be regulated at the European genetic healthcare services.
MeSH term(s)	Humans ; Genetic Counseling ; Europe ; Genetic Testing ; France ; Surveys and Questionnaires
Language	English
Publishing date	2023-01-30
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2184135-4
ISSN	1878-0849 ; 1769-7212
ISSN (online)	1878-0849
ISSN	1769-7212
DOI	10.1016/j.ejmg.2023.104710
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Article ; Online: Screeners vs. Non-screeners for Colorectal Cancer among People over 50 Years of Age: Factual and Psychological Discriminants.

Ciucă, Andrada / Moldovan, Ramona / Pintea, Sebastian / Dumitrașcu, Dan / Băban, Adriana

Journal of gastrointestinal and liver diseases : JGLD

2020 Volume 29, Issue 4, Page(s) 529–537

Abstract: Background and aims: Colorectal cancer (CRC) is the third most frequent form of cancer worldwide, and approximately one third of cases have a positive family history of CRC or associated cancers. Colonoscopy is one of the most effective methods of ... ...

Abstract	Background and aims: Colorectal cancer (CRC) is the third most frequent form of cancer worldwide, and approximately one third of cases have a positive family history of CRC or associated cancers. Colonoscopy is one of the most effective methods of screening for CRC. Uptake of colonoscopy is suboptimal, and many countries lack a national screening programme. Our study aims at exploring and ranking several factual and psychological variables according to their accuracy in discriminating between screeners and non-screeners for CRC in a convenience sample of people over 50 years of age. Methods: The study included 103 individuals aged over 50 years, recruited from day centres for the elderly. We explored socio-demographic variables, frequency of colonoscopy, previous recommendations for screening, health literacy and family history of cancer. Receiver operating characteristic (ROC) analysis was used to establish the discriminative value for each variable between the positive and negative decision for colonoscopy screening. Areas under the curve (AUC) and their equivalent Cohen's d values were calculated. Results: Almost a quarter (25.75%) of participants reported previous colonoscopy screening. ROC curve analysis shows that colonoscopy uptake is best discriminated by perceived benefits of screening (AUC=0.71, d=0.78, p<0.001), previous recommendations for screening (AUC=0.68, d=0.69, p<0.001) and previous recommendations for preventive measures (AUC=0.67, d=0.64, p<0.001). Conclusions: Recommendations from healthcare professionals lead to improved colonoscopy uptake when emphasising the benefits of screening. Results can further inform psychosocial interventions by bringing empirical evidence to emphasize screening benefits and explicit recommendations for individuals at risk for CRC cancer.
MeSH term(s)	Age Factors ; Aged ; Colonoscopy ; Colorectal Neoplasms/diagnosis ; Colorectal Neoplasms/epidemiology ; Colorectal Neoplasms/psychology ; Early Detection of Cancer ; Female ; Health Behavior ; Health Knowledge, Attitudes, Practice ; Health Literacy ; Humans ; Male ; Middle Aged ; Patient Acceptance of Health Care/psychology ; Sex Factors ; Socioeconomic Factors ; Surveys and Questionnaires
Language	English
Publishing date	2020-10-27
Publishing country	Romania
Document type	Journal Article
ZDB-ID	2427021-0
ISSN	1842-1121 ; 1841-8724
ISSN (online)	1842-1121
ISSN	1841-8724
DOI	10.15403/jgld-2263
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Article ; Online: Research priorities in psychiatric genetic counselling: how to talk to children and adolescents about genetics and psychiatric disorders.

Mundy, Jessica / Davies, Helena L / Radu, Mădălina / Austin, Jehannine / Vassos, Evangelos / Eley, Thalia C / Breen, Gerome / Moldovan, Ramona

European journal of human genetics : EJHG

2022 Volume 31, Issue 3, Page(s) 262–264

MeSH term(s)	Humans ; Child ; Adolescent ; Genetic Counseling ; Mental Disorders/genetics ; Mental Disorders/therapy ; Mental Disorders/psychology ; Research
Language	English
Publishing date	2022-12-21
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1141470-4
ISSN	1476-5438 ; 1018-4813
ISSN (online)	1476-5438
ISSN	1018-4813
DOI	10.1038/s41431-022-01253-0
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Zs.A 3589: Show issues

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Article ; Online: The impact of psychiatric disorders on caregivers: An integrative predictive model of burden, stigma, and well-being.

Radu, Mădălina / Ciucă, Andrada / Crișan, Cătălina-Angela / Pintea, Sebastian / Predescu, Elena / Șipos, Roxana / Moldovan, Ramona / Băban, Adriana

Perspectives in psychiatric care

2022 Volume 58, Issue 4, Page(s) 2372–2382

Abstract: Purpose: The study investigates the predictors of caregivers' experienced burden, stigma, and well-being, when looking after family members diagnosed with a psychiatric disorder.: Design and methods: This cross-sectional study included 168 caregivers; ...

Abstract	Purpose: The study investigates the predictors of caregivers' experienced burden, stigma, and well-being, when looking after family members diagnosed with a psychiatric disorder. Design and methods: This cross-sectional study included 168 caregivers; perceived burden, stigma, well-being, knowledge, illness perception, and medical variables were assessed. Findings: A number of correlates of burden, stigma, and well-being have been identified and are being discussed. The integrative predictive model showed that the caregiver's emotional representation of illness best predicts burden (β = 0.38, p < 0.001), stigma (β = 0.53, p < 0.001) and well-being (β = -0.36, p < 0.001). Practice implications: Our results can enable health professionals to tailor psychosocial interventions addressed to family members of individuals living with a psychiatric condition.
MeSH term(s)	Humans ; Caregivers/psychology ; Cross-Sectional Studies ; Social Stigma ; Mental Disorders ; Family/psychology
Language	English
Publishing date	2022-03-28
Publishing country	United States
Document type	Journal Article
ZDB-ID	391097-0
ISSN	1744-6163 ; 0031-5990
ISSN (online)	1744-6163
ISSN	0031-5990
DOI	10.1111/ppc.13071
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Article: Improving follow up after predictive testing in Huntington's disease: evaluating a genetic counselling narrative group session.

Stopford, Cheryl / Ferrer-Duch, Mariangels / Moldovan, Ramona / MacLeod, Rhona

Journal of community genetics

2019 Volume 11, Issue 1, Page(s) 47–58

Abstract: Recently updated Huntington's disease (HD) predictive testing guidelines emphasise clinicians' responsibility to facilitate emotional support following testing, regardless of the result. Yet models of post-test counselling support are poorly defined. ... ...

Abstract	Recently updated Huntington's disease (HD) predictive testing guidelines emphasise clinicians' responsibility to facilitate emotional support following testing, regardless of the result. Yet models of post-test counselling support are poorly defined. Moreover, it is unclear how these might be best delivered. In this project, a genetic counsellor and clinical psychologist developed standalone group sessions using collective narrative practices for individuals post-predictive testing. Here we present an evaluation of the experiences of one group of six people who have tested mutation positive for HD and remain pre-symptomatic. Two partners also attended the session. Observations, evaluation forms and telephone interviews were used in data collection. Interview data was available from five mutation-positive individuals and one partner. Qualitative data were analysed using a thematic framework approach. Responses were overwhelmingly positive, emphasising the importance of a specifically arranged time and space to share experiences in a structured way. This was typically the first time participants had spoken openly with someone in their situation. Narrative facilitation of discussion encouraged participants to re-discover their strengths and resiliences, with similar experiences being discovered through connections with others. The evaluation was successful in implementing group narrative interventions as part of the predictive test counselling support for Huntington's disease. Participants suggested that the approach could be extended and adopted for other genetic conditions.
Language	English
Publishing date	2019-04-18
Publishing country	Germany
Document type	Journal Article
ZDB-ID	2543127-4
ISSN	1868-6001 ; 1868-310X
ISSN (online)	1868-6001
ISSN	1868-310X
DOI	10.1007/s12687-019-00416-9
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